GINA applies to all employers with 15 or more employees, regardless if it is a not-for-profit organization or a corporation.

GINA’s protections in employment do not extend to the US military or employees of the federal government. In 2000, President Bill Clinton signed Executive Order 13145 into law, which protects federal employees from genetic discrimination in employment. The US military has its own policies in place that may protect members of the military from genetic discrimination.

There are some exceptions to GINA that determine when an employer can legally have your genetic information. Some of the more common situations may include:

Inadvertent knowledge: In some cases an employer may learn about an employee’s genetic information accidentally. If he or she overhears a conversation about an employee’s sick parent, for example, the employer has not violated GINA.

Publicly available information: An employer may learn the genetic information of an employee or the employee’s family members if it is available in the newspaper or other publicly available information sources. If the employer learns of an employee’s genetic information this way, the employer has not violated GINA.

Voluntary health services: Some employers offer voluntary health or genetic services, including employee wellness programs. If specific requirements are met and participation in the service is voluntary, then forms, questionnaires, or health care professionals treating employees as part of the service may request family health history or other genetic information.

Family and Medical Leave Act (FMLA): Forms that employees must fill out as part of asking for time off from work to care for a sick family member may include questions about genetic information. Employees may need to provide this information for extended leave to be approved.

In all the above instances, it is against the law for employers to use the genetic information collected to discriminate against employees.

Under GINA and the Health Insurance Portability and Accountability Act (HIPAA), all medical information collected by an employer, including genetic information, must be kept in a confidential, separate medical record.

No. GINA makes it against the law for health insurers to use information about diagnosed conditions in an individual's family members.

Example:
Your doctor asks you about health conditions your family members have been diagnosed with. You share that your maternal grandmother died of colon cancer, your mother has cardiovascular disease, your father and his father have high cholesterol, and your brother has hypothyroidism. The presence of these health conditions in your family members helps your doctor understand and talk with you about which conditions you may be at increased risk to develop. This information cannot be used by your health insurer to discriminate against you.

No. Health insurers can still make decisions about whether or not they will pay for services based upon your medical need for those services.

In general, it is against the law for health insurers to ask for, require, or obtain genetic information about applicants or the individuals that they cover. An exception is that your health insurer can ask for genetic information to make a decision about whether or not they will pay for a requested test, treatment, or procedure, in order to determine the medical need for the service. In these situations, GINA only allows the insurer to ask for the minimum amount of information they need to make a decision. Once they have the information, GINA prevents them from using the information to discriminate against you.

Example:
If you decide to have a genetic test because you have a family history of colon cancer, your health insurer may need to know that your family history meets certain criteria in order to pay for your test.

If you have the test and are found to have a mutation that increases your risk, and you need a treatment or procedure based on the test result, your insurer may ask for information about why you need the treatment.

In these examples, according to GINA, the insurer may ask for only the minimum amount of information required to determine if the test or treatment are medically necessary.

As of the date this resource was written (April 2010), GINA’s protections for insurance apply only to health insurance. They do not apply to life, long-term care, or disability insurance. Some state laws may apply to these types of coverage. Check with your state insurance commissioner’s office for more information.

GINA was signed into law on May 21, 2008 by President George W. Bush. It is now in effect. At the time this resource was written, the federal agencies responsible for enforcing the law are finalizing the regulations that specify how the law will be enforced.

The Department of Labor, the Department of the Treasury, and the Department of Health and Human Services all have specific responsibilities in enforcing the health insurance protections of GINA. The Equal Employment Opportunity Commission (EEOC) is responsible for enforcing the employment protections of GINA.

Remedies for individuals who feel they have been discriminated against in either health insurance or employment include corrective action and monetary penalties. Under Title II of GINA, individuals may also have the right to pursue private litigation.

GINA provides a “floor” or minimum level of protection against genetic discrimination. If a state has a law against discrimination that is stronger than GINA, the state law applies. For example, some states don’t allow health insurers to make decisions about whether or not a person qualifies for health insurance or how much they should pay for health insurance based upon current health status. Check with your state health insurance commissioner to learn about your state’s protections against health insurance discrimination.

GINA requires that state health insurance regulations match GINA’s protections as of May 21, 2009. If states do not offer GINA’s level of protections, the federal government can step in and enforce GINA.

GINA protects you from genetic discrimination in employment and health insurance regardless of when you had a genetic test done, when you received the results, or when you used genetic counseling or other genetic services.

However, GINA is not retroactive. This means that GINA does not apply to acts of discrimination that occurred before GINA went into effect.

Example
A woman had a genetic test that determined she has a mutation increasing her risk for breast and ovarian cancer. Regardless of when she had the test, if she were discriminated against by her health insurer or employer before GINA went into effect, GINA’s protections would not apply. However if the discrimination occurred after the law was in effect, the protections would apply.

Health insurance discrimination: Start with your state insurance commissioner’s office. GINA requires that state health insurance regulations match GINA’s protections as of May 21, 2009 and that they enforce the law themselves. If states fail to provide GINA-level protections, the federal government will enforce these protections and fine the health insurer.

Employment discrimination: Individuals first must file a claim with the Equal Employment Opportunity Commission (EEOC) in order to later file a claim in state or federal court. The EEOC will assign an investigator to your case, contact your employer, and attempt to resolve the situation through mediation. If the EEOC finds reasonable cause for discrimination, it will attempt to resolve the matter through informal conciliation. If at the end of the process a meritorious claim is found to exist, the EEOC will give you a notice of Right to Sue or may actually file a civil suit on your behalf. Visit www.eeoc.gov for more information.

An individual's genetic tests or the genetic tests of the individual's family members, and the manifestation of a disease or disorder in the individual's family members

Genetic information also includes the request or receipt of genetic services or participation in clinical research that includes genetic services, for both the individual and the individual's family members

Information regarding an individual's sex or age is NOT protected genetic information under GINA

GINA defines genetic services as receipt of genetic testing, genetic counseling, genetic education, or participation in a research study.

GINA defines a genetic test as the analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.

Under GINA, a genetic test does not include the analysis of proteins or metabolites directly related to the manifestation of a disease that could reasonably be detected by a healthcare professional with appropriate training and expertise in the field of medicine involved.

Examples of tests covered by GINA:

Tests for BRCA1/BRCA2 (breast cancer) or HNPCC (colon cancer) mutations; tests for Huntington Disease mutations, carrier screening for conditions such as cystic fibrosis and fragile X syndrome, and classifications of genetic properties of an existing tumor to help determine treatment. Newborn screening tests for genetic conditions are covered by GINA, however the diagnosis of the genetic condition following confirmatory testing is not covered by GINA

In GINA, the term “manifest disease” means that an individual has been or could reasonably be diagnosed with a disease, disorder, or pathological condition by a health care professional not based mainly on genetic information (for example, the results of a diagnostic test). More specifically, a disease is “manifest” when an individual is experiencing signs or symptoms of the condition.

GINA & You Information Sheet Developed by Genetic Alliance, National Coalition for Health Professional Education in Genetics, and Genetics and Public Policy Center PDF

Click Here for an educational presentation for advocacy organizations.Click Here for a PowerPoint version.

The Departments of Health and Human Services, Labor, and the Treasury have published in the Federal Register its proposed regulations for Title I of the Genetic Information Non-Discrimination Act (GINA).